Wednesday, April 6, 2016

Parents are often
overwhelmed by the challenges presented by a child with an autism spectrum
disorder (ASD). Research has shown that
parents of children on the spectrum exhibit a characteristic stress profile which
includes anxiety related to the child's uneven intellectual profiles, deficits
in social
relatedness, disruptive and maladaptive behaviors (internalizing
and externalizing problems) and long-term care concerns. Among these stressors, the child’s maladaptive behavior
profile is most reliably linked to parent stress.Studies also indicate that raising children with
ASD is associated with higher levels of parenting stress and psychological
distress than parenting typi­cally developing children, children with a
physical disability, or children with developmental delays without ASD. Mothers,
in particular, appear to face unique challenges related to the characteristics
of ASD. Because autism impairs social relatedness and adaptive functioning,
parent stress can decrease helpful psychological
processes and directly influence the parent or caregiver’s ability to
support the child with disabilities.

Increased attention is now
being given to the psychological well-being of parents of individuals with ASD.
A number of studies have exam­ined the factors that
can influence the impact of children’s problem behavior on parent mental
health. A study in the Journal Autism examined the
relationships between child problem behavior, parent mental health problems,
psychological acceptance (e.g., accepting and not being adversely influenced by
negative emotions and thoughts that a parent may have about their child), and
parent empowerment (e.g., actively attempting to change or eliminate
potentially stressful events through the application of knowledge and skills).

The
researchers found that the more positive parents’ psy­chological acceptance and
empowerment, the less they reported severe mental health problems. Although
greater parent empowerment was associated with fewer parent mental health
problems, psychological acceptance had the greatest impact on parent
mental health problems, after controlling for ASD symptomatology, negative life
events, parent and child gender, and child age. As child problem behavior
increased, parent psychological acceptance decreased, resulting in an increase
in parent mental health problems. These results suggest that problems that are persistent,
stressful and not easily managed via an active problem solving approach may
negatively impact the individual’s process of psy­chological acceptance, which in
turn can lead to reduced adjustment.

This study has several
important implications. The relatively chronic nature of behavior problems in
children with ASD may explain why acceptance is a more significant
psychological construct for explaining parent mental health than is
empowerment. If difficulties are man­ageable and support readily available,
then an active, problem-focused coping style would be related to improved parent
adjustment. However, for children with ASD who exhibit more persistent behavior
problems, or for highly stressed and frustrated parents, a problem-focused
process may not be enough to ensure positive parent adjustment. If problems are
less controllable and/or support less accessible, it may be impossible for
parents to focus exclusively on trying to change or avoid their current
experience. The authors comment, “In these situations, parents need a different
coping strategy, one that allows them to acknowledge their current experience
without trying to change it or avoid it.”
Therefore, it may be critically important to understand and evaluate the
situation of the family, and offer parents both types of coping skills (acceptance
and empowerment) for use across different situations.

Importantly, this study supports
the exploration of accept­ance and mindfulness-based interventions as effective
approaches for parents of children with ASD and underscores the importance of
considering the parent psychological experience when developing treatments for
child problem behavior. The authors conclude, “Child-focused therapy should not
focus exclu­sively on the child. At the same time that we provide parents with
skills and supports to improve their children’s experience, we must also invest
in helping parents to deal with their own emotions and coping strategies.”Further research is needed to investigate the
effectiveness of such interventions, and other parent-focused therapies, with
con­trolled designs and large, diverse samples of parents.

I am so appreciative of your posting this. As a mother of three autistic children I cannot even begin to express my emotions and the stress. What makes it even harder for me is the lack of compassion I get from family especially my husband. I am glad to know that I am not alone.

You highlight the stress that parents experience so very well. As I was reading this I remember one parent who suggested that we make a T-Shirt to wear saying, I have the hide of a rhino especially for going out with the children. Support groups are essential for one to live and laugh together. Thanks so much.

How good you are to point out the stress parents experience. In the organisation in which I worked we referred to the Warrior Moms and Dads. the article made me think of one of the Dads saying he wished we could make a T-Shirt which said "I have the hide of a rhino" designed specially for outings - just one area of potential stress. Thanks again for your articles - so informative and so helpful.

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The objective of bestpracticeautism.com is to advocate, educate, and informby providing a best practice guide to the screening, assessment, and intervention for school-age children on the autism spectrum. Timely articles and postings include topics such as screening, evaluation, positive behavior support (PBS), self-management, educational planning, IEP development, gender differences, evidence-based interventions (EBI) and more. This site also features up-to-date information on scientifically validated treatment options for children with ASD and a list of best practice books, articles, and links to organizations. Designed to be a practical and useful resource, bestpracticeautism.com offers essential information for psychologists, teachers, counselors, advocates and attorneys, special education professionals, and parents.

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“It is rare that one book can pack so many resources and easy to digest information into a single volume! Families, school personnel, and professionals all need the extensive, and up-to-date tips, guides, and ‘must-knows’ provided here. It’s obvious the author is both a seasoned researcher and practitioner – a winning combination.” - Dr. Debra Moore, psychologist and co-author with Dr. Temple Grandin, of The Loving Push: How Parents & Professionals Can Help Spectrum Kids Become Successful Adult

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“This book is an essential resource for every educator that works with students with ASD! The easy-to-read format is complete with up to date research on evidence-based practices for this population, sample observation and assessment worksheets and case studies that allow the reader to apply the information presented.” - Gena P. Barnhill, PhD, NCSP, BCBA-D, LBA, Director of Special Education Programs at Lynchburg College, Lynchburg, VA

“As a parent-advocate, Dr. Wilkinson's book is both comprehensive and easy to digest. It's comprehensive because it provides readers with a 10,000 foot view of the landscape. It's easy to digest because it is written in language that non-professionals can understand. If you read only one book, this is the one.” - Dan Harris, JD

"The author does a wonderful job presenting all of the data, facts, figures and statistics in a very structured layout that is straightforward, practical and convenient to access. With the rising incidence of children being diagnosed on the Autism spectrum, this guide should be required reading for all direct service providers who work with children in the school setting. On behalf of the Autism community I extend a sincere thank you to Lee Wilkinson for this impressive and most valuable resource.” - ParentCoachingforAutism.com

“Dr. Wilkinson has created an outstanding blend of academic research and practical application in a text that is so clearly written it is a pleasure to read for professionals and parents alike. This book fills an important need that has existed for years. Dr. Wilkinson has created an indispensable resource that should definitely be in each school’s professional library.” - Ally4Autism.com

"The author has expertly formatted the book and each chapter so that the reader is provided with an excellent resource of recent and relevant information pertaining to screening, formal assessment, and interventions with individuals in this population.” - Canadian Journal of School Psychology

“The uses and limitations of a variety of methods from psychometrics to observational assessments are clearly presented. Case studies give the reader exemplars of a range of assessments and the implications for learning in a highly readable way. Key issues are provided in summary boxes. Interventions include a detailed guide to promote skills in self-monitoring in the learner. In summary, this is an accessible book, of benefit to all those involved in the assessment and support of students with ASD.” - Educational Psychology in Practice

"School district administrators, attorneys, educators, and psychologists will want to have this guide available to them as a resource on 'best practices' in the field of ASD." -Diane Adreon, Associate Director, University of Miami-Nova Southeastern University center for Autism and Related Disabilities (UM-NSU CARD)

"This book provides a complete source for parents, educators, researchers and clinicians seeking information related to assessment and interventions available for individuals (mostly children) diagnosed with Autism Spectrum Disorders (ASD). Parents will benefit from reading this book as it exposes variety of issues to consider when seeking assessment and treatment for their children." -Journal of Autism and Developmental Disorders

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